Tarceva Side Effects

• By Marylou1
• Posted June 17, 2009 at 8:53 pm
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Hi Pat,
I have had a lot of side effects from Tarceva but I don't get too many cramps. Usually when I get a cramp it's because my foot or leg was in a bad position.

However, my hubby gets a lot of leg cramps and his doctor told him it was nerve damage. Usually they give him an RX for Gabapentin and that seems to help. Wish I could help more.
Much Love,
Marylou

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• By arlene
• Posted June 17, 2009 at 9:24 pm
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Hello Pat- my husband has been on Tarceva for 25 months now. He has had all of the same side effects that you listed. The hand and feet cramps show up out of the clear blue. Whatever the side effects, it has been working so we say it is worth it. Hope it works for you. good luck. arlene

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• By sheilake
• Posted June 18, 2009 at 12:09 am
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I had leg cramps in the beginning of Tarceva and started taking supplements (Green Tea extract, curcumin, Vitamin D and multi-vitamin) and they went away.

Also was losing a ton of hair before I discovered a great shampoo and conditioner. You might want to email me for the "Tarceva Flaming Face Regime" which has a lot of suggestions for all those troublesome side effects. (Christine Stewart was the originator of the facial part of this).

Let us know how your scan came out. Sure hope all these side effects count for something!

Sheila
sheilake@aol.com

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• By chessie-too
• Posted June 18, 2009 at 5:38 am
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Hi Patty,

I've been on tarceva for over 2 years and also get the cramps/spasms from time to time. The only thing that has worked for me is Hyland's Leg Cramp pills with quinine. They are over the counter at any Walmart for about $2.49. They stop the cramps within about 15 mins for me. I carry them with me all the time just in case.

Good luck and God Bless

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• By JenniJ
• Posted June 18, 2009 at 11:52 am
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Sheila, I would be most grateful to know the name of shampoo and conditioner you recommend, although I have not yet come out in a rash (6 weeks on Tarceva) would also appreciate details of the Face Regime. Hopefully I will be able to get the products in France where I live.
Thanks in advance
Jenni

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• By JenniJ
• Posted June 18, 2009 at 11:55 am
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Sheila, I would be most grateful fo know the name of shampoo and conditioner you recommend, although I have not yet come out in a rash (6 weeks on Tarceva) would also appreciate details of the Face Regime, Hopefully I will be able to get the products in France where I live.
Thanks in advance
Jenni

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• By PattyLynn
• Posted June 24, 2009 at 4:54 pm
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Thanks to all who responded. Sorry I have not been on the computer in the past week. I have been in a funky mood and really did not want to talk about lung cancer or drugs or anything. I had a cold and was miserable on top of depression.

The oncologist said that muscle pain as well as hair loss can be side effects from the Tarceva although not as common as those usually mentioned.

The doc went over the results of my CT scan.....which were kind of confusing (hence the depression). The scan showed the tumor in my upper right lobe shrunk significantly and has now taken the appearance of fibrosis - the good news. The scan also showed a new tumor in the upper left lung approx. 5 x 10mm in size that was not present on the last scan. The report did not make any mention of the tumor in my lower left lung. So.....we are not sure if the Tarceva is working or not. For right now the onc. recommends I stay on the Tarceva and wait and see what the surgeon and his radiologist has to say when I go to my appointment on Friday. I hope he has a more definitive opinion.

Having lung cancer sucks. Living with lung cancer sucks. I try real hard to maintain a positive outlook but sometimes I just want to SCREAM in frustration. It is hard to smile all the time and tell everyone I feel as good as can be expected...no one wants to hear how you really feel especially when you don't outwardly appear "sick".

Sorry I really didn't want to have a pity party but at least I know that my fellow LCA members know what I am going through. Thanks again to all the wonderful people here.

Prayers to all. Love, Pat

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• By PattyLynn
• Posted June 24, 2009 at 4:56 pm
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Thanks Marylou, I will request as script from my doc. Pat

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• By nmonreal
• Posted June 26, 2009 at 1:09 am
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Patty Lynn - I hear you! It is very hard to have a disease that makes you feel horrible (and you know will kill you eventually), but no one can see it. I have been on Tarceva for 6 mos. I too get the leg cramps and my hair thinned significantly while I was on the 150mg dose. I have dropped to 100mg (since it worked REALLY well and in an effort to lessen the side effects) and my hair seems to be doing better. It's quite frizzy (someone described it to me as einstein hair) and quite hard to style.
Take care!
Nannette

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• By PattyLynn
• Posted June 29, 2009 at 1:07 pm
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My hair is little frizzy and vvery much has a mind of its own. I am going to have my girlfriend cut it to try and tame it down. It seems the thinner it gets the wilder I look.

I too hope to be on Tarceva for a long time. So far so good.

Take care of yourself. Pat

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• By sheilake
• Posted June 29, 2009 at 2:04 pm
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Sorry to hear about your CT scan. Mixed results are both confusing and depressing. You don't know which way to go. My last scan had the same issue so my oncologist put me on Plaquenil, which has reversed my rising CEA score. Plaquenil is supposed to augment the effectiveness of Tarceva.

The "Einstein hair" is a side effect (thin, wavy, wild) of Tarceva. The shampoo, Thick Hair (1-800 777 0302) and conditioner, Life by Altema (Wal-Mart) has really helped with the thinning. My oncologist also recommended that I treat my hair as if I were the Queen. Brush very gently, no blow drying etc. I have named each hair and talk to it (almost, but not quite). All this has turned the hair loss around.

Good luck with it.
Sheila

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